New Screening Measure Detects Signs of Autism at 12 month Well Child Visit

New Screening Measure for Doctors Detects Signs of Autism at 12 Month Well Baby Visit--Good News!

There is some wonderful news for all of us parents of young children! The Journal of Pediatrics has published a new tool for screening one-year-olds for early signs of developmental delays--including symptoms and behaviors consistent with Autism. Autism is a developmental delay that impacts children's language, social functioning, play, learning, and behaviors. Since Autism varies so much in severity, clinicians refer to it as a 'spectrum disorder' (you may hear the term Autism and Autistic Spectrum Disorder used interchangeably in news stories). This is excellent news for parents and children, because early identification is crucial.

The new screening questionnaire called the Communication and Symbolic Behavior Scales Developmental Profile for Infants and Toddlers (abbreviated CSBS DP IT) is specifically designed to be used by pediatricians during the 12 month well baby visit. So why is this such a big deal? Most children who have Autism and other developmental delays do not get referred for a proper diagnosis until around 5 and a half years of age. This means that most families lose two or three years that would be the very best time to get their child early intervention services. Research has shown that early intervention services (including speech language therapy, special education, applied behavior analysis and psychotherapy) are the gold standard of care in treating children with Autism. Not only is this the time when the child's brain is the most adaptable, but professionals can intervene early to prevent undesirable behaviors from taking root. Young children with Autism desperately need to learn skills that unfold naturally for most children, and there is no time to be lost in getting them the help they need.

Lets consider a fairly typical course for a child with Autism. I'll ask you to imagine the case of a child named Aiden Doe (not his real name). Aiden was an incredibly easy baby. He was beautiful and healthy. He did not cry much, but liked to be left in his crib to stare at his mobile. Since he was their first baby, his parents did not notice that he babbled and smiled less than most babies. During his doctor's visits, he was growing and gaining weight. The physician did not note anything amiss. Aiden did begin speaking at 18 months, so that was a relief. What his mom did not realize for a while was that he was not speaking like most children, but repeating things other people or TV characters said. Over time, Aiden became more and more different from his peers. He developed sensory hypersensitivities to noise and textures, and started having temper tantrums. His mother took him to the doctor, but during his visit he played happily with the otoscope and sang songs, so the physician did not get to see anything unusual. The next couple of visits he had ear infections and strep throat, so he just clung to his mother like all children do when they are sick. So again,the pediatrician could not see anything of concern.

“He's just a boy,” or “He'll grow out of it” said Aiden's relatives. Aiden's parents tried him in the best preschool they could afford. Preschool was a nightmare for Aiden. He became so stressed he withdrew to the train corner and screamed when anyone touched him. He was soon expelled for hitting other children who tried to touch 'his' trains. Mrs. Doe quit her job to stay home with Aiden. Mr. and Mrs. Doe were facing increasing behavior problems at home. Aiden began banging his head on the wall when they tried to stop him from playing with his trains or watching his favorite video. He would spend hours pacing and talking to himself. When he was upset, he rubbed the skin on his lips until it was raw. They could no longer go out to eat or to visit friends without fearing Aiden's meltdowns. “How on earth is he going to be ready for Kindergarten next year?” they began to ask. “Are we just bad parents?” they worried.

Now lets imagine that Dr. Jones gave Mrs. Doe the CSBS to complete before Aiden's 12 month visit. It would have taken Mrs. Doe about 5 minutes to complete the 24 item questionnaire. The CSBS could have picked up on early signs such as less eye contact, delayed communication skills (both language use and gestures), and unusual motor and social behaviors. All of us parents know that a well baby visit lasts about 15 minutes. This is barely enough time for the physician to conduct a physical exam, never mind learn much about the child's development (and lets face it, doctor's visits are hardly the time when your child presents his best self). Unless your child is demonstrating obvious differences during those precious 15 minutes, even a terrific physician can miss important signs of developmental delays.

In this scenario, Dr. Jones would have had data to indicate that there was something unusual about Aiden's development. Dr. Jones could then have referred the Does to a psychologist, speech language pathologist, developmental pediatrician or the public school system's Infants and Toddler's Program. Any of these professionals could have given Aiden a thorough evaluation to determine if he had a significant developmental delay. Each of those professionals would have been able to create an individualized treatment plan just for Aiden. The Does' could have accessed the services they needed to help their son. Aiden could have spent the next four years learning the skills he would need to cope with the world. His parents could have learned how to manage his behavior and soothe him. When it was time for Kindergarten, the family would have had a team of professionals in the public school system (or private, as appropriate) who were designated to meet Aiden's needs so that he could make progress. Best of all, the Does could have escaped the misery of not knowing how to help their little one.

Since 2007, the American Academy of Pediatrics has recommended that physicians screen for Autism and other developmental delays at 18 and 24 months. With this new tool, physicians can gather information that may identify up to 75% of children with developmental delays at 12 months. It is not the standard of care anymore for a pediatrician to simply 'eye-ball' a child and ask a few questions--particularly when there are such high quality, easy to use screening tools. I encourage all of the parents who read this to ask your pediatrician to use objective screening devices. Children with disabilities need to be identified as early as possible! The CSBS can be downloaded for free from this website:
http://www.brookespublishing.com/store/books/wetherby-csbsdp/checklist.htm. If your doctor does not already use it, you can bring it in yourself.

While this is is truly wonderful development, it worries me. Many children DO grow out the described symptoms. It seems unwise to jump the gun with a diagnosis so quickly. Autism is already over diagnosed and a catch all for behavioral problems (along with ADD.) There are also other disorders that need to be screened for more often; such as verbal Apraxia and sensory integration disorders. It's sad to see these children classified ad autistic when they really are not. Also, what a sad world we livw in where a child is thrown out of school for having a disorder. Teachers and schools NEED to be more understanding towards children of all types. School is an important part of development for every child. If the child is acyong out and clearly suffering, why punish them more? Words spoken by a mommy of a wonderful little girl with verbal apraxia!

Though I generally do not have the time to read and respond to comments (if I did I would never get the chance to sleep!), I think its important to clarify a few points to prevent misunderstandings. If you read the study or just look at the questionnaire itself, you will see that this questionnaire is not intended to 'diagnose' children with autism who do not have it. This is a screening measure, not a diagnostic tool. Parents do not have to worry that if they fill out this questionaire or one like it that their child will be automatically labeled with a disability. This is a tool that will detect a variety of signs that can indicate developmental delays. Think of it just like when the doctor draws blood--just because they run tests does not mean they find anything significant. The study shows that this questionnaire is quite an effective tool for identifying children who need early intervention services. The purpose of this tool is to determine which children should be referred on for more thorough evaluations. The whole point of a well child visit is to screen your child for physical and developmental problems.

The research does not support the conjecture that autism is over diagnosed. In fact, many segments of the population are under-diagnosed with regards to autism, including: Spanish speaking children, African Americans, immigrant children, children without health insurance and those living in rural areas. All children have a right to be identified when they have special needs.

And to Diva2317, I completely agree that schools expel young children too quickly without taking the time to learn more about them. I believe it will help schools do a better job if more children are identified sooner rather than later by using reliable tools to make accurate diagnoses. Then those kids with special needs can have access to schools that will meet their needs. Sorry to hear about your daughter's difficulties.

What are there signs of Autism? I have a son who hates going to the doctor because of prior trauma? He screams and wont let any of them touch him. But at home he watches tv like any normal boy,wrestles with his older sister, he can remember and recite things that he hears just once, and can pick out words from books that we read to him. But his meltdowns are horrible. If he doesnt get something right away or its not what he wants then he throws a temper tantrum. Is that normal? Our boy is very shy as well. We did have him in daycare when i was in the military where it took him time to warm up to people and the other kids his teachers said that after he gets over his cry spell he is fine and plays. I havent had him in daycare now because of his pooping issue and he is not potty trained (he is almost 3). He refuses to sit on the potty (he is seeing a pediatric gi). So he hasnt been in school which is horrible for him because we want him to be around other kids....when we go to the park he shys away from them...So i dont know if i my son is normal, will he grow out of this, have other people been through this....I have a 11 yr old daughter but she was totally easy. My son on the other hand is a challenge. Any insight would be helpful? By the way i am from maryland and work in Bethesda.

He sounds pretty normal for a boy as they can be tough to deal with through the terrible 2,s. He has to be handled differently from his sibling. Try giving him lots of encouragement and notice of him when he is doing something good and right and just ignore him when he does something bad. e.g temper tantrum. I had a similar circumstance with a mild little girl 5 yrs older and then a boy destined to be a leader afterwards.... We did find however learn at 7yrs old that he was tactile defensive. I must say I had never heard of it, but he went to Occupational Therapy for a while. He is 26 years old now and the best thing that ever happened to me. I wish you all the best with both you children.

Thanks.. both my kids are great...our son has been through alot in his short years from Hydrospadius surgery to the gi problems we are facing....he is very active... I will take your advice and make sure he has alot of encouragement! Thanks

rebbie2011: I was told by a special ed teacher who has mostly autistic children in her room that if your child doesn't have tantrums, to worry. lol While some autistic children do have big meltdowns, more often than not, in her experience(and mine, DD has a mild case of higher functioning autism) autistic kids don't get upset enough to do that very often.

My sister's normal children have HUGE meltdowns. When my autistic child does, it's small and lasts all of 10 seconds. She might stamp her foot and sound frustrated. Then she's laughing into thin air for no reason. The other autistic children I've been around do a lot of the same. Just go around cracking themselves up.

Some other signs would be stemming, a repeated movement, like spinning in circles or waving their hands in front of their face. Wrist flapping is one or rocking from one foot to the other repeatedly(I have an ADHD brother that did this). They might walk on their tip-toes a lot. Not a lot of eye contact. My daughter will a little, but not a ton. Delayed speech. At 3, my daughter is just starting to wave bye-bye again, to say "hello." They might stare into the distance just laughing for no reason.

DD is mild so she isn't particular about the order of things, but some children have to have everything a certain way. Meals at exact times, 4 nightlights lit... Weird things. A lot hate the texture of beef. Many have texture and sensory issues in general. Not liking certain fabrics.

The biggest hurdle for any parent with a child who is a bit different or even kids who are neurotypical is to be able to transition from one thing to the next. Keeping things simple and structured often help keep the meltdowns from happening so much. Ory Nathan has a book that talks on how to help kids transition. All children need to learn to soothe themselves and control their emotions. For some it takes longer than others. Kids with ASD's take longer to grow up (25 years at least). As a parent you want to give them a life and experiences like you had. Unfortunately you just have to give up on that dream because their children are different. It is hard but you do what is best for the child.

I forgot to mention that DD did get a screening for developmental delays and autism at her one year checkup. Passed with flying colors. She told me, "I poop," when she was 11 months old. I sat her on the potty, and she pooped. When she told people "bye bye," it sounded like a regular child. Not even baby talk, like a regular child. She would say "Up, momma," and other 2 word sentences. She did everything on time; walking, pulling up. Around 14 months all the progress stopped. The talking stopped, potty training is still stopped.

The one year old shots didn't do it. She started stemming at 8 months. Developed a few other of her quirks then.

She probably got it from me. A lot of my cousins have some form of autism, and I'm suspected of having it. I was 7 or 8 before I understood a command as simple as "Put the fork in the sink." I have sensory issues and have been doing some sort of stemming all my life. High school was a nightmare. I spent it socially inept. Like vizslamadness said about taking longer to grow up, 25 was the age where I started to really catch onto things. I'm 29 now. I started understanding people more, their jokes and body language. I still have trouble with empathy, though.

I'm not too worried about my daughter having it. She understands more and talks less where I was the opposite. If I was able to graduate high school and go to college, I expect her to be able to. =)

rebbie2011: My kids and I were all just over 3-years-old when we finally got the potty thing down and they were "normal" - but my son did give me a tougher time and then a friend suggested that I take by him sheets of stickers and every time he used the potty, he got to choose one and then stick it onto a paper on the wall above the toilet paper - from his sitting position.

I was AMAZED. He loved it. Little twit. I don't know if that helps. I'm sure you know about praising their efforts. They respond well to that too. You sound like a great parent and I certainly wish you the best.

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